Hopeful in Canada

Hi everyone! I started quite a tempest when I posted about my near death experience from Methotrexate reaction 6 months ago..... I am now 2 weeks post first Actemra infusion. Maybe a little relief? Perhaps it's wishful thinking!!

Still taking prednisone 15mg & have found Circumin and omega oils a great anti inflammatory benefit.

Not too thrilled about my moon face and weight gain tho :)

I'm nervous about the potential biological harm but am now being followed closely by a Respirologist & new Rheumy. As so many have stated, our disease untreated is as dangerous as the drugs. I think we must be our own best advocate in treatment options. I find fatigue so crippling, more so than the pain. this blog is comforting in the knowledge that we aren't alone in this very difficult journey... Thanks for all the great sharing.......

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  • Hi there I hope you get relief now. Just interested in your journey! I have come off methotrexate after 7.5 years, my liver is in a bad way and huge, cannot digest certain foods or metabolise, I have put on heaps of weight and have a 9 month pregnant stomach that cant be accounted for, except the liver is causing it. My diet is very light. I went off meth. and my rhemy just said ok come back when you cant put up with the flares he was really nasty, not offering any help, so bad that the nurse in the room followed me out and gave me a patients rights card if I wanted to report him. I dont know what to do now as my liver is in such a bad way.

    Any thoughts appreciated. cheers

  • Hi denvajade, I am shocked at the behaviour of your rheumatologist. You deserve better. I would advise asking to be seen by an alternative rheumy. Obviously it's up to you but I asked to see a different rheumy several years ago when I was reduced to tears by a registrar who dismissed my symptoms and failed to recognise that I was traumatised due to previous bad experiences with drugs. It was very upsetting and I felt like a number on a conveyer belt. I'm much happier with my current consultant who involves me in all decisions about my care and treatment. Your rheumy should have offered you an alternative drug - it's unacceptable to send you away with active disease. If you feel up to reporting him I would go to PALS in your hospital and explain what has happened, they are they to help patients and deal with complaints. Hope this link is useful: nhs.uk/chq/Pages/1082.aspx?... I'd also strongly advise seeing your GP asap for advice about your liver and weight gain before you see a new rheumatologist - this is not something you should be dealing with on your own. Perhaps your GP could help get you an appointment with a new rheumatologist too. Take care.

  • Hi francherry thank you for your reply, I requested thru my gp for another rheumy but there is only one at the hospital and private is $550 for first visit and then $150 each time after, my rheumy offered me the sulpher drug then proceeded to say then you will blame me for that upsetting your stomach, I replied I would not I have never blamed you just told you what has happened to me, I left his office crying because my stomach and liver distress me so much and no one wants to address it. NOT going back to a doctor at this stage just wornout from 19 months going to doctors and specialists nearly every week, at first they thought I had liver cancer, then pancreatic, then ovarian and so it went on finally found I have the early stages of bone marrow cancer ie myeloma which causes bones to ache on top of RA. Feel like waiting to die at 62. sorry about the rant.

  • I'm so sorry to hear of the predicament you find yourself in denvajade. What I would question is how was this problem with your liver missed? Surely, unless it was a peculiar adverse reaction, or your liver was already compromised prior to treatment, any problems would have been addressed from a rise in your ALT level in your Liver Function Test? The liver is the only internal organ that has the ability to regenerate itself & only lengthy misuse or disease can stop it doing so. Without wishing to alarm this shouldn't be left unattended. What does your GP consider is causing the shape of your stomach & your digestive issues? I would certainly be taking the nurse's huge hint seriously whatever as she patently considered your Rheumy's attitude unprofessional.

    I have monthly bloods to monitor me whilst taking MTX to ensure there are no adverse reactions re toxicity. I once had my MTX upped from 15mg to 20mg & was quickly pulled back to 15mg when my next bloods showed a rise in my ALT level & fortunately I'm controlled now at that dose.

    You say your distended stomach can't be accounted for but not, if any, investigations or procedures have ruled out that it's your liver causing it.

    I think what I'd be doing in your position is questioning a solicitor as to whether he considers it would be worth pursuing a clinical negligence claim. I would also seriously consider whether the option given to you, having failed MTX, was also worth considering, if not as part of the same claim maybe a separate one as not to offer any other treatment in an aim to control a chronic disease could be considered malpractice. A Medical Solicitor will be able to advise if he thinks you have a reasonable chance of successful claim or claims.

    As I see it his actions, or lack of them, have resulted in a diminished quality of life & the Hippocratic Oath he took when he became a qualified doctor has been broken.

  • Hi there did you get my first reply? lost it somewhere???? in NZ you cannot sue or go anyone for malpractice. so it leaves doctors and specialists with the power. My ALT is 94(0-40) my AST 54(0-35) no one is doing anything about it, I have put myself on a fatty liver diet, not much difference to how I have been living for months, oats for breakfast, homemade vege soup for midday, veges and fish for tea. No coffee, alcohol, fat or meats, used to it now at first thought my throat was cut. No methotrexate, take milk thistle for my liver, have been on all sorts of meds for my stomach to no avail so just quit all those foods. I spent the last 18 months soooo sick spending most of my time in bed, now a little better and doing more. thank you again for your reply.

  • No denvajade, this is the first reply but no matter. What I don't understand is why you appear to have left untreated & that must be so upsetting. I understand when you say you're used to it now regarding eating but that doesn't solve the problem, you don't have a reason for being as you are I mean. I'd want to be able to get to the root of the problem, the cause, as it's a guessing game for you at the mo isn't it?

    Has your gallbladder ever been investigated? I'm wondering as with your ALT/AST levels could indicate a problem there & could also add to your food probs & distended stomach.

    Could your GP refer you to another hospital & another Rheumy or have you no options, even if it means travelling? I so feel for you & just wish you could get you RD under control then at least for the time being that was one less thing to cope with.

    Sending you my best wishes from so far away. :)

  • thankyou for your concern, all indications are a toxic liver due to methotrexate.

    my rheumy is not interested in that fact.

    I dont know if I could go to another area to see a different rheumy, i will enquire. I have been to so many doctors and naturopaths and on seeing me think I am in the last stages of cancer but that is not so, just look so ill. I have had gallbladder removal 40 years ago. so just trying to cleanse my liver as I have no other options. cheers

  • That's absolutely no problem! It just concerns me that you just appear to have been left to cope on your own & basically put you're not. Your liver problems, if due to the MTX, should be of paramount importance & your Rheumy has just dismissed it & your RD which is just wrong in my eyes. I

    I completely understand you must be sick of doctors but without seeing them you're never going to get to the bottom of your very real problems. I do hope you see your GP & request referral to another Rheumy, you can only ask.

    I wish you all the best & really hope there's someone you can see that can get you back on track. x

  • Money and lawsuits should be really low as a priority. A consultation with another Consultant separate from the same institution would be the best course of action first. Establish facts first and find out whether things can be improved for you. Then when you have have got that help, it would then be prudent to see if you have a case. This is the UK! Not money grabbing Americans always trying to find blame and wealth!!!

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